It feels like it has been an eternity since my surgery 21 days ago. I feel like I am in some sort of time warp, the days have gone by quickly but at the same time I feel like I should be further along. I often times have to be reminded by Rick and my family that my surgery was just 3 weeks ago (if I am getting down about the difficulty I have with eating, congestion from the le fort/septum still, weird feelings in my face, and a myriad of other things.)

Rick and I went to the movies tonight to celebrate 3 weeks post op/ much needed date night. We saw the Batman movie, and it felt nice to feel good and actually feel up to doing some eye makeup!! And feeling “social” without the environment being too overly stimulating/ needing to talk to people.

I will say, I have stayed pretty positive throughout this whole thing, way more than I thought I would… partially because the anxiety leading up to the surgery was over and that was such a relief. It was just DONE. Then I saw a lot of progress the first 1.5 weeks. And now I feel like I have kind of plateaued in my progress. Some of my friends who had this surgery within 2 weeks of me say the same thing. I haven’t seen any real big changes in anything and my brain is still ahead of my body, leading to some frustrating and difficult moments for me.

My brain wants to go meet friends but my body has low energy and weird heart rate things happen to me/ exhaustion from the meds and my body healing.

My brain wants to work on the RV or retake cello lessons, but manual labor and using my left thumb (injured) are difficult for me. I just bend over and I feel like my face is going to break from the muscular pulling/ pressure and I get dizzy.

My brain wants to go on walks but my body can only get so far and the cold air HURTS like nothing else. Once the masseter muscles start chattering it is very painful. Ricky had to put his jacket around my face just 3/4 of the way down our block and we scurried home. The dogs are mad that they aren’t going on walks, so their judgement doesn’t help either 😉. If you are reading this right now and are having a summer TJR surgery, that is better!!

My brain wants anything tasty at all, like even just a blended sand-which or blended meat again, but my body is still struggling to swallow pureed smoothies and soups + my maxilla is still fusing to the skull so no chewing is allowed. I am also starting to feel nauseous from the liquid foods and just long for something more solid. I hope my surgeon clears me for scrambled eggs or something next week when I see him. I started crying today from watching someone eat a hot dog, it just smelled so good. Hard to even watch people eating on TV! I usually lose about 6-10 lbs with any jaw/ mouth surgeries I have had, so I have lost about 7 lbs now and am trying my best to keep my weight up. But it’s difficult – my body just doesn’t get hungry a lot anymore, which is maybe an odd thing to hear but it’s been this way for about the last year or two of my ICR issues. It’s like I have trained myself to be this way. Eating is just so unenjoyable and the fear of pain I have associated with food probably still has a large foot in the door with me (it is still hurting now to eat but that is from stretching my limited mouth opening if I am trying to fit a spoon in my mouth. Also add in the fear of choking due to my swallowing issues and we have a real complex mental and physical situation going on here. I don’t feel dramatic at all anymore in saying this, this is real and this is hard.) Swallowing has gotten better slowly at least.

I also do miss my ability to move my jaw side to side. With the joint prosthesis, I can only move up and down. I used to move my jaw laterally to release muscle tension, and it feels like I still need to do this but am unable too. It is so strange to lose this ability. But in light of all that I get back (sleeping better, less future chronic pain, less headaches, ability to functionally eat) it is a small and worthy price to pay. But I just miss it now in the moment.

Also, look at these oxygen readings for the month of March! I can breathe, I can breathe!

Dealing with some anger and difficult emotions

Throughout this week dealing with my own frustrating healing process and talking with others online in my situation, I’m emotional about how there are TMJ exclusions on many insurances and feel a deep sadness for my friends who are struggling to get coverage and struggling with other comorbidities associated with their TJR or TMJs. Just lots of struggle and pain, and most of us are really young and already just beaten down by life it feels like/ many I feel lose hope. This is a pretty good summary video by the TMJ Association of some of the issues we face, or this article as well https://www.ncbi.nlm.nih.gov/books/NBK558001/ . I do wish this video were exaggerating the complications and pain levels but from my own experience and countless other stories I’ve heard, it’s really not 😢.

I was actually looking at CH Ministries the other day (a group share insurance program, because I am so tired of dealing with regular insurance which tends to think any jaw issues are only cosmetic or not really needed for health. Nothing gets me more angry these days.) So then I come across this on CH Ministries guidelines,

It’s just such a slap in the face to all of us who have been through so much. I would much rather have gone through so many other illnesses that insurance covers than go through the last 15 years of my life again of mixed TMJ treatments, medicines, and surgeries to end up worse off than ever with a bilateral total joint replacements in my jaw now – which may or may not be covered by insurance. Yet a hip, shoulder or knee replacement would most likely be covered and not questioned. I still do not know how much my insurance will pay for my procedure and that is frightening. They approved it, but often times with TMJ issues they do this to then code bundle and low ball you, and the fact that they “approved” it makes some other appeal options out of my reach actually. It’s really messed up and they are pretty tricky. They did this to me on my last jaw surgery.

I’ve also struggled to use my thumb this week (got out of my splint for it last week), which I fractured and tore a ligament in over Christmas and needed surgery on. Even with going to physical therapy 3 times a week, I am just not getting my movement back in the knuckle of my thumb, so I have been disappointed with this outcome as well. I just feel like I keep breaking. With these emotions, plus thinking of my friends plus thinking of my own issues I’m struggling with I just had some very overwhelming days this week. I was driving and crying after one of my doctors appointments and just pulled up to some random church to go inside and pray and express to God how difficult this has all been. I don’t feel the need to be in a church to pray but I just needed to be there for some reason that day and have some quiet so I could think. I know He cares for me but many times I just feel radio silence. I thought about a framed photo of a little bird that my late grandmother had hanging in her bathroom. It had Matthew 6:26 on it, which says,

“Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?”

Other Updates this past week

Swallowing

• My swallowing has maybe improved some? It still feels freaking weird. I’m swallowing a lot of air and my mother-in-love told me this is what newborns do a lot, which I thought was funny 😂 I am kind of a newborn trying to figure out how to eat and talk haha. I’m getting some feeling back in the back of my palate which I think helps me to tell where my tongue is, where a pill is in my mouth, or where a bulk of pureed mess is so I can move it to the back of my throat. The front of the palate is still very numb.
• I have linked up with a myofunctional therapist at the recommendation of one of my other TJR friends, and thankfully this therapist is with 👏  it 👏 . Much like all the other amazing doctors and therapists that have taken a long time to add to my health team. And she has worked with many TJR patients to improve swallowing, tongue placement, speaking and lip placement post-op of these very intricate surgeries. I was worried to go to someone in Dallas like a feeding or speech therapist because I am just so tired of wasting time and money on appointments and doctors that do not understand this condition. And that is totally fine, I know what I have is weird and rare – but I have also had a horrible experience through the medical system and that is very valid. So when you find these kinds of therapists and doctors, you get really excited.

Physical therapy

• We are just doing some lymphatic drainage for now since I am just 3 weeks post op. Helps to just move swelling and other things out from the surgical area, and just feels nice ☺️. And I love my PT so it is always nice to just catch up with her as well.

Le Fort cracking noises

• Best part of this week – on Wednesday I noticed I had no cracking for the first time!!! I think when I swallow it still suctions up and down a little bit, but not near as much as it was doing before. I started really getting serious about taking,
  • Vit D₃
  • Calcium
  • Vit C
  • Tons of protein
  • Vit K
  • Collagen powder
• And I think this has all helped my body to really start healing that fracture. I was so freaked out about this beforehand, a few people were saying the cracking lasted months for them – so I wouldn’t be surprised if it came back but so far so good 🙌
• I am working on a separate article now on my supplement research, I’m hoping to have sort of a TJR Resources section on my blog soon to talk about topics that I have learned about throughout my journey, such as items to have prepared, questions I asked surgeons, mental health, and topics to discuss with caregivers. The ICR facebook group has a lot of this as well in the hub❤️ https://www.facebook.com/groups/IdiopathicCondylarResorption/permalink/1410214152644481

Infection Scare

I write this in the sense that I know I tend to be an “alarmist” sometimes. I look at the small risks and become really afraid of them. I am the 5% of bad TMJ disorders⁵ and probably even a smaller subset than that and I was the 10% group of my diskectomy that failed (according to a percentage Dr. Piper gave me, unsure what this number is if a research study were to be done). I’ve also gotten infections after my scoliosis surgery in 2007 and after my palate expander was placed in Nov 2020. So, I might be an alarmist, but I feel justified in it sometimes!

• Sooo I ended up getting a really bad acne breakout on my back, which I don’t like even writing about this but I’m uploading pictures of my mouth every day so whatever – like really bad breakout that was starting to spread to my face. So I just curiously looked up “surgery and acne” links, and literally the first two articles I found were on the link between P. acne and prosthesis infection (Chances of getting a TJR infection are 1-4.5% – more so 2.5% being the average, depending on the article you read^1,2,3, would require a re-operation and a brand new joint ordered, probably a 6 month wait! It was my greatest fear going into this surgery – that or just aseptic loosening without reason). So I messaged my surgeon like “Here are these articles, I’m just freaking out right? Lol?” And he said “Let’s put you on doxycycline and spironolactone to get this under control”. So I got kind of freaked out and also went to an acne care specialist for extractions (wish I wouldn’t have done the extractions now, some of them bled, which leads to my next bullet point below), a chemical peel and bluelight therapy along with a dermatologist to see what was going on. She thinks (and one of my other friends figured it out too) that it was the steroid pack that caused this acne party, which makes sense because it also messed up my cycle. So at least we know where it came from!
• And luckily P. acne is more of an intraoperative concern than it is postoperatively (so it is good to try and get your skin around your face cleared up a few months before surgery I think). It could be introduced via the incision rather than a late stage blood transfer of P.acne, which is also suggested in the article at the bottom of this post, otherwise I don’t know why my surgeon would have called in doxycycline and spironalactone to get it under control instead of something like rifampin⁴.

Pain Levels

• Past pain patterns: My old pain patterns are STILL not presenting themselves!! I am so happy about this!!!!!! I figured out now that I am on the other side of this, that my MANDIBLE was pressing hard on all my neck muscles, it was so far back on my neck from losing the 75% of my condyles on both side over the last 20 years. It was probably causing most of my radiating pain in the final years. Joint pain was starting to get worse as well, but it wasn’t as “searing” as it was in 2016 before my fat graft diskectomies.

• Surgical Pain patterns: It really just depends on many variables – If I have multiple appointments that day/ have moved a lot
  – How I slept
  – How much I have talked, eaten or moved
• Generally I am still taking half a norco, 1-2 klonopin, 1/2-1 trazodone at night and an ibuprofen to manage my pain during the day. I still have not gotten the new pain medicine from my pain management doctor (insurance hold up, not surprised).
• I would say I still have some boney pain wherever the prosthesis is screwed into my skull or mandible, and “phantom” joint pain if you will, my face just feels tight and kind of sore all over, my teeth still hurt when they touch sometimes and I have shooting pain twice a day in one tooth 😬, temporalis muscles and scalp are still sore but only notice if I touch them, sinus pressure and congestion is still bad from the deviated septum and just the le fort itself.
• At night everything just kind of hurts, muscles, bones, then I kind of “Reset” with sleep but wake up a little uncomfortable too and take ibuprofen/ norco/ or klonopin right when I wake up.

Occlusion:

• I have noticed more and more than the right side of my bite meets but not the left. I will definitely need some work once I can get my mouth opening up to 30mm is the goal, I am hoping for a more normal 38-40mm if I can. Normal jaws can usually open 40-45mm if I remember correctly. (right now I can only open 10mm, enough to squeeze a pill or force a baby toothbrush in). I try and open my mouth and let the lower jaw hang to try and stretch out these muscles, I still have not been given any exercises officially though. Maybe next appointment with my surgeon we will discuss this

• Have a zoom appointment with my orthodontist next week as well where I plan to talk to him about the concerns on my bite and my concerns over the scanning device they use in their office, I had trouble fitting it in my mouth even when I could open wider. I worry that it might have trouble fitting into my mouth. I would NEVER want them to force it as I always have to be gentle on the joints, they run the risk of popping out of the socket although rare, would require surgery to pop it back in or most likely a new joint would have to be ordered. I really hope that Stryker/TMJ Concepts waiting list goes from 6 months to 3 months real quick!

Posture

• I have now been told by various people and a doctor that I need to be doing some posture exercises, given that my neck was craned forward for years in order to open the airway, apparently this doesn’t always go back to normal. So will take some work. I am barred from T1-T12 as well so I have no natural curve in my thoractic spine anymore.
• With how overwhelmed I feel about everything else, I am going to go for progress over ✨perfection✨ on this one. That might just be my new motto.

TJR Further Specifics

3 week post op | Swelling and Feeling :

1. Swelling
   • Swelling is down a little more – kind of show in my vlog below my puffy areas
   • Genio area and cheeks are most swollen

1. Feeling– in % of what I can feel (ex: 99% have the feeling back in my lips) – also this is very arbitrary and everyone’s anatomy and surgical cuts are different. I’ve heard feeling comes back even years later sometimes,
   1. Top lip 100%
   2. Bottom lip 90%
   3. Palate 60% in front, 80% in back
   1. Below eyes 60%
   2. Cheeks 85%
   3. Skin over joints 50%
   4. Chin 30%

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Citations:

1. “Avoiding and managing temporomandibular joint total joint replacement surgical site infections”, https://pubmed.ncbi.nlm.nih.gov/22883323/#:~:text=The%20infection%20incidence%20within%202,2%20weeks%20to%2012%20years.
2. “The occurrence rate is less than 2 % with greater risk for patients on immuno-supressant medications such rheumatoid patients or others with connective tissue/autoimmune diseases”, https://drlarrywolford.com/tmj-temporomandibular-joint-disorders/total-temporomandibular-joint-tmj-replacement-2/
3. “Alloplastic reconstruction of the temporomandibular joint”, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5750826/
4. “Propionibacterium acnes: from Commensal to Opportunistic Biofilm-Associated Implant Pathogen”, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4135900/
5. Individual and Societal Burden of TMDs ( really great article!!) , https://www.ncbi.nlm.nih.gov/books/NBK558001/